Ugly Truths: When it Isn't Endometriosis

“When all you know is pain you don’t know that that is not normal. It is not a woman’s lot to suffer, even if we’ve been raised that way."

(Address, 2011 Endometriosis Foundation of America Blossom Ball)
― Susan Sarandon

Dear Readers,

*TW - Makes mention of surgery and infertility*

Day 11 Post-Op: This post is for those like me who may have missed the warning signs:

I had a sadly similar experience to so many with chronic and not otherwise specified pain. Having had spinal specialists pull me into their office and show me herniated discs resulting from an auto accident and subsequent concussion - I attributed my pain to that. Still, they would grab their chins and shake their heads unable to link the condition of my commonly degenerating spine to the severity of my pain.

I had lumbar pain and notorious monthly cycles with a history of crippling migraines a decade before that. I self-medicated the pain and moved on with my day. Like many women, I thought it was just the standard mark of womanhood. It's not.

I’m here to tell you that your menses should be an irksome inconvenience with mild discomfort. It should not cause debilitating pain, profound fatigue, uncontrollable bleeding, painful intercourse, infertility, missed days of work, referred pain to other areas of your body, fainting, paralysis, or on-going symptoms on either side of those 7 days each month.

Endometriosis is not solely a female reproductive disease. There are deeply horrendous versions of this condition involving the diaphragm and thoracic systems which can lead to lung collapse.

Likewise, the discovery of Endo in stage 1, 2, 3 or 4 does not directly correlate to one’s pain level. One may be in stage 4 Endo and be asymptomatic, or one may be in stage 1 Endo with debilitating pain levels that leave them bed ridden.

Please view the following video for a firsthand artistic look at what Endometriosis feels like and the obstacles many women with this condition face:

https://youtu.be/NpXGG2EBBT8

Like many others, the source of my pain was left undetected and largely overshadowed by what isn't Endometriosis and therefore left untreated to grow progressively worse over time. I was very active until one day I couldn’t walk upright. A little while later I had what I thought was a yoga injury and resigned myself to a desk job. At the height of it I would experience full blown paralysis. I would attempt to stand up and collapse at my bedside. During one of these episodes, I was completely alone in my second story apartment during a hurricane. There I laid, with a great deal of fear around what was happening to me, with only a friendly feline nearby to lend a hand. I went on to endure several hospitalizations for various reasons where my exposure to medical trauma and gaslighting was only reinforced by my sparkling blood panels and unremarkable findings, never mind the impact on my mental health. Meanwhile, emergency physicians and neurologists worked diligently to rule out Multiple Sclerosis and Lyme’s Disease.

Soon thereafter I noticed prolonged pelvic involvement along with my pain management doctor who referred me to an OB/Gyn where I learned 1 in 10 women are impacted by Endometriosis, a condition which I never received any education about or even heard of until it was too late. The first OB sent me for a pelvic CT which you can read about in my previous posts. Ultimately, she advised that she was not knowledgeable enough to treat me and recommended I find an OB who specializes in Endo with a skill set in robotic surgery. So, I went for a second opinion. By the time I arrived at my current doctor's office, I was defeated. I felt like I had spent all of my time and energy just developing the language to articulate the pain I was experiencing only to be rejected or deterred in some way. Finally, this time was different.

I learned that it is hereditary, and I had a second-degree relative with Endometriosis. In late 2022 I reached a breaking point and had a candid conversation with my doctor about radical intervention. I promised her total patient compliance. As a result, I endured more synthetic hormones and a searing endometrial biopsy that I was shocked to learn is still performed in the U.S. today with no anesthesia. I was through with menial treatment options. I wanted answers. I wanted a solution. "Just take it out," I said.

On January 4th, 2023, I had a laparoscopy + total hysterectomy. My uterus, fallopian tubes, and cervix were removed along with the discoverable Endo, cysts, and scar tissue. I also had "fluid" in my pelvis which was later confirmed to be blood due to nearby cysts bursting on their own thereby triggering the Endo process all over again. A self-sustaining well-oiled machine I must admit. My ovaries were left intact to avoid being thrown into medical menopause at the age of 33, but they're not in good shape.

Surgery is the only way to know for sure if Endometriosis is the culprit, and even then, it can be missed by its microscopic presentation.

Laparoscopy will also allow your provider to assess for other pelvic diseases, tumors, and other organ damage that in all probability will NOT show up on imaging. This procedure has a decent recovery time with considerable pain, but with that also come a wealth of information. In my case it was worth it. I had one cyst appear on imaging. I was told pathological (non-cancerous) cysts are normal and thought to dissolve on their own. When my doctor got in there, however, she found dozens, some of which were the size of my uterus and no doubt responsible for the nerve involvement in my legs, something my provider said she had “never heard being linked to Endometriosis before.”

I am sharing my vulnerability with you in the hopes that it will reach other women. Women who suffer in silence. Women who suffer the same way I did with the not knowing. Women who struggle to connect their symptoms even though they know something is wrong. Women faced with incompetent physicians, friends, or family members who add insult to injury. Women who suffer without medical insurance or the ability to afford the surgical intervention needed to treat pelvic conditions like Endometriosis. Women who sit at my own lunch table and have no knowledge of what Endometriosis is, so they ask me. The first and most important problem is often the barrier to entry paired with the realization that there is no cure. That even after surgical intervention, the damage of Endometriosis may return. That multiple surgeries are not uncommon, and infertility is a tragedy many families face.

In many ways we are forced to become experts in our own care and share that information with others, including MDs. In extremely rare cases, Endometriosis is also found in men. When I put my ear to the ground and listen to the stories being told, my heart jumps right through the ceiling. My voice is only one of many and all of our experiences vary but for one shared dangerous delay in treatment. There is still so much work to be done.

If you sense that something might be off, trust your gut, and book an appointment with a specialist who can shine a light down this seemingly guideless path.

💛

Discuss: If you or someone you love has been diagnosed with Endometriosis, please share your stories in the comments below. You are not alone, and more people need to be made aware of this devastating condition.

Disclaimer: I would like to speak to someone in a leadership role regarding implementing a more appropriate space to discuss Endometriosis and similar conditions. It is not legally considered a Disability, nor has there been space in this forum on this topic since 2016. I would appreciate a push in the right direction. Thank you.